A dear friend sent me this article from a woman who suffer autoimmune issues and writes for the New Yorker. Some of the things, especially about what it's like to experience pain as the sufferer vs supporter, I thought was sooooo true. Insightful and comforting in a way.

6 Replies

When it first was published in 2013, my USA family read this article and finally began to understand a bit more about my life with infant onset lupus (I was 60 in 2013 😉). This is a really good article for any friends & family & colleagues who just don't "get" what you're up against day in & day out + on & on & on....

The author makes a good point about not becoming overly obsessed with the disease - I feel I'm on a constant tightrope trying to balance not becoming totally, as she puts it, narcissistic when I'm asked how I am, but at the same time being honest.

This is indeed a great read & somehow leaving a feeling of connectedness with the author. I feel that this is often how I live 'what will be, will be', or 'what is it now?' As you say Coco the on & on & on factor. It is also that enduring painfulness to it, or the itchiness, or the despair of the lost personality, but yet the acceptance that this is in fact now your life & 'this is as good as it gets & sometimes it is ok!' To Progress: Peace & Love Pixiewixie xxx

I do wonder if most of us also get to that point, of putting up and shutting up, outside of this community. I know I have.

If I wanted to stay married and keep my friends, I needed an alternative outlet. Fortunately, we are able to be accepted just as we are here. Good and not so good days we come together and feel amongst 'knowing' friends.

Friends here, provide reassurance that life is not over; just different, when diagnosed with autoimmune disease. They help us reduce visits to medics and to take better care of ourselves.

I loved the self depreciating sense of humour in the New Yorker article. Very necessary survival technique in autoimmune life!

Thank you for that link, terrific read....we are all rather brave souls I feel. You expect the article to conclude with a definitive dx and a satisfying treatment regime...but as we all know, that's 80% is what we have left just to be.